I am new to this site. Terrified for my very best friend with a 3 cm lesion on lower tongue. Trying to do as much research as I can. Pet scan tomorrow.
Welcome to OCF! You have found the best place for info and support. The lesion could be many things besides cancer. Hope you dont need our group but we are here and always ready to help if you do.
Good lcuk!!
Biopsy came back positive. Pet scan tomorrow, meeting with oncologist tomorrow about chemo. Friday with radiation doc. This is so scarey. I was wondering if anyone out there has had a lesion like this. It is becoming hard for him to talk and eat and we have not started any treatment yet. Christine, which forum would i go to in reference to anyone experiencing the same pain associated with this 3cm tumor/lesion on base of tongue?. Is there anything to spray or drink to sooth the pain he has right now?
Im very sorry the result was positive for OC!
I suggest you read many posts on the forum and educate yourself about whats to come. When asking a question try to put your post in the category it fits best, very rarely would the General section be used. Ive sent you a private message (PM) with an important link. Click on the tiny flashing envelope next to the My Stuff tab and take some time to review the link. It gives lots of tips on how to navigate the forum and instructions on how to add a signature. The signature is a very important step, it helps us to help you so please complete it asap.
My suggestion would be to go to a major comprehensive cancer center (CCC) for the very least a second opinion. Maybe that would help to ease your mind. Here is a link that will give you a list of cancer centers. Find the very best medical care you can and go with it.
You will have many appointments prior to any treatments. Make sure to have a full blood workup done including testosterone and thyroid levels. Get a thorough dental check up and take care of any questionable teeth, get flouride trays made. Anyone you talk to about your husbands condition who offers their assistance, tell them when the time comes you will let them know how they can help. Make sure you make a list of everyone with their contact info. This could come in handy down the road.
For right now your husband should focus on eating all their favorite foods. His sense of taste and ability to swallow may make eating difficult for a while so eat now. Dont worry about gaining weight, eat everything and have dessert too. Most patients undergo substantial weight loss during their treatments so bulking up is a good plan.
Best wishes!!! Stick with us and we will help you thru everything.
NCI Cancer Centers
Welcome to OCF and so sorry to hear about the cancer. Events are happening at a rapid pace and you are surely in a daze.
Take good notes as best you can. There will be a lot of new lingo and info being communicated.
One thing to consider is ensuring you are at a facility that uses a team approach and a tumor board where many doctors will review your case. Then one other option is to seek a second opinion from a different facility.
These may take a couple extra weeks but you have time and it is better to be 100% certain of your decisions rather than rush and have doubts later.
Other tests will be scheduled and that will take some time too so hang in there and read here and ask away as you get more details.
Do provide as much detail to the diagnosis as you can as it helps get better replies
Thank you for the info. I have my notebook... and thanks for the support.
Hi Sandy,
You found a great resource here. I started reading posts on this forum after my husband was found to have a 4.7 cm mass at the base of the tongue, which is way back in the throat, not the oral tongue. You mentioned base of tongue, which would be the same area. I learned so much about what to expect, important things to do, and how others have coped.
One of the first things I did was to start preparing for lots of unknowns in the future. We got a durable power of attorney in case he was unable to handle any banking or other matters that might arise. We got advance directives and healthcare power of attorney documents. Some of these need to be witnessed and/or notarized, depending on your State laws. I hope we never need either, but I won't have to stress about if we ever get to that point. We made a list of everything he needed to do around the house while he was feeling ok. You know, all those little repairs and chores that pile up over the summer.
Of course, there were lots of appointments and procedures. PET scan and surgical biopsy were the first. We talked to a general oncologist at the local community hospital and quickly realized it was worth driving an hour and 15 minutes to the nearest city, to the academic medical center with a head and neck cancer clinic. They re-analyzed his tissue samples and reinterpreted the PET scan, staged him at a tumor board, and went over treatment options. Great team, very comprehensive care, totally up to date on everything I've read on the forum.
Based on I learned here, he got right in to the dentist for a check up. We elected to have all his amalgams replaced with composite fillings. That may have been an over reaction, but it gave us something to do while waiting for treatment to start. He got fluoride trays and super fluoridated toothpaste.
We got him a big, comfy recliner. He's tall and his feet hang over the end of most recliners, so we got the super sized chair and he LOVES it. Now that he's in treatment, it's great for resting, naps, and tube feeding.
He chose to go ahead with a feeding tube before starting rads and chemo. It's a controversial topic here, but for him it was the right call. Due to the size and location of his tumor, he had swallowing problems and significant weight loss even prior to the diagnosis, and issues with aspiration pneumonia very early on. However, thanks to Christine's refrain about 2,500 - 3,000 calories minimum, he's kept his weight up pretty well.
I learned to pace myself and take a break from thinking and reading about cancer. It gets overwhelming at some point, and you just need a change of topic and scenery! We deliberately paced ourselves when it came to telling people the news.
This is all still pretty new to me, too. I hope some of what I've learned will be helpful to you. Hang in there. Everyone keeps saying "be sure to take care of yourself, too," so I will say it to you now.
Hugs and best wishes.
Man, you are all over this!!! He is in very good hands.
Welcome to OCF Sandy. Wish we met on better circumstances but glad you found us. In addition to the advice above, make sure he goes to the initial appointments with a second person. Its a lot of information to take in and a second set of ears if a great help.
To answer your question Xylocaine Viscous is a useful anesthetic to help him eat. It needs a prescription so bring that up with the oncologist or whichever doctor you see next.
Its a scary time but its very important to not give in to the fear. Don't go Googling things, you'll just scare yourselves. As cancers go this one is very treatable and he'll have a better than average prognosis. It sounds like he is in good hands so try to keep calm while the diagnosis and treament plan gets put together.
Thanks to all of you. Yes I am stressed beyond belief and I take my notebook with me and ask as many questions as I can. Pet scan today, met with Chemo doc today too. Rad doc Friday and just praying we get decent news on the pet that was done today. He has not lost any weight yet. I keep talking to him about the feeding tube, he is on track with that. You folks are really helping me and I thank you from the bottom of my heart. I have to figure out how to add my signature now.
Well, being what it is... I feel relief today after a 2 hour meeting with RO. He was awesome and answered every question I had before I even asked, 2 pages of questions in my trusty note book. He is extremely optimistic about curing this nasty thing which was a good to hear. I think I will be able to sleep tonight, finally. We have a bumpy road ahead. but thanks to all of you, I knew what to ask. Keep on plugging away and I believe next year at this time it will be a memory we can forget. Thanks to all of you!
I'm so glad you got all of your concerns addressed. So many of us just stumbled along, not sure of what to ask. I hope for the best possible outcome!
Sandy - appears you have found momentary peace with the circumstances. I have passed the one year mark and credit this group as having a major impact in my journey. Keep using them as they have already walked were you will go. There will be challenges along the way and some frustrations along the way but you are not alone. Keep us posted on progress, questions etc. Be strong and informed.
Well done Sandy. Its a bumpy road ahead for sure but between you and this RO your friend is in great hands.
I feel like I have my own special support team here. Thanks so much folks. I lost it again for a few seconds today. Just dreading the next steps. I hope you all have a fantastic weekend.
Glad things are going well for you. Having knowledge is power and comfort. I really believe the doctors appreciate those who put the effort to get educated and ask all those good questions. Subconsciously, as any human, you may care just a bit more if you know the other person is right there with you.
good luck